Fetal Alcohol Spectrum Disorder

We’re encountering an increasing number of cases involving Fetal Alcohol Spectrum Disorder (FASD). Kate Hammond reflects on some recent training from Cassie Jackson, founder and director of The Centre for FASD.

Fetal Alcohol Spectrum Disorder, formerly known as Fetal Alcohol Syndrome, is a complicated and often undiagnosed condition which is thought to affect between 1.2 and 2.4 million people in the UK. FASD can affect people who have been exposed to alcohol before they are born. However, not everyone who experiences prenatal alcohol exposure is affected by FASD and we don’t yet know why.

Prevalence

It was previously thought that sentinel facial features were the key indicator of prenatal alcohol exposure or FASD, however it is now known that only 10% of people diagnosed with FASD present with those facial features. Furthermore, according to the University of Salford, 27% of children in Care are diagnosed with FASD, compared with just 2% of the wider population diagnosed with this condition.  Up to 400 co-conditions can occur alongside FASD and the brain damage experienced from prenatal alcohol exposure can display in a number of ways, including:

• Balance, vision, and hearing issues
• Learning disabilities such as difficulty processing information quickly
• Organ functioning such as the heart or liver
• Sensory and motor functioning
• Focus and attention

The symptoms of FASD can often overlap with neurodiverse conditions, such as Autism and ADHD, leading to misunderstanding, or misdiagnosis, for those with FASD. It is also possible that someone can be diagnosed with both FASD and Autism and / or ADHD. A key factor in improving diagnosis and treatment is training for legal, medical, social work and educational professionals to ensure knowledge around how symptoms of FASD might present and how best to implement support for those who have FASD.

Lived Experience

The training session included a powerful video of Rossi Griffin, a young person diagnosed with FASD, discussing his lived experience of the condition. Rossi explained that he is proud of his diagnosis and has written a book, Life in the FASD Lane: Rossi’s Fabulous Guide to Navigating Your Teens and Young Adulthood, in an effort to raise awareness of the disorder and offer guidance to young people.

One of the difficulties with identifying FASD is that their neurodiversity does not present as expected. They may appear as defiant and unable to take instructions because they appear to have understood the conversation, but they have been unable to process the actions required. The reality may be that someone is masking and unable to complete the task. This may then be categorized as a behavioural issue owing to the presentation of their understanding. People with FASD often function similarly to someone with a learning disability, but do not necessarily have a low IQ.

Alcohol Effects on a Fetus

In order to better support those with FASD, a paradigm shift is required to change the public health information available to people and move away from the language blaming mothers and parents, which may stop them from feeling able to access support for themselves and their children.

One key issue around FASD and prenatal alcohol exposure is public knowledge of the damages of alcohol. It is thought that 70% of women in the UK consume alcohol, compared with 11% who smoke. Coupled with the complexities of pregnancy and the fact that 50% of pregnancies are thought to be unplanned, where someone may not know they are pregnant,  there is a lack of public health information on the effects of alcohol. It is not currently mandatory for alcohol companies to provide a warning label on their products and health information was only updated in 2016 to state that you should not drink any alcohol when pregnant.

It has historically been recommended that pregnant people drink Guinness for their iron intake or red wine for the anti-oxidants. In reality, someone would need to drink 3 pints of Guinness to consume the same iron as just one egg yolk, and one large glass of red wine could equate to 3 units of alcohol, particularly if free poured at home.

Alcohol is a teratogen which means it is poisonous to the unborn baby and can cross the placenta and cause malformations in a fetus and interfere with their development. When a pregnant mother consumes alcohol, within 2 hours, the fetus experiences the same blood alcohol level as the mother. The alcohol then has the potential to remain in the amniotic fluid and the unborn baby does not have the developed liver to detoxify the alcohol from its body. Alcohol can interfere with a fetus’ oxygen supply and the development of their organs, in particular their brain.

Moving Forward

Many social workers and foster carers do not have training on FASD, therefore they are not as equipped as they could be to support families experiencing FASD. Just as everyone has their own response to alcohol, each person affected by FASD has their own symptoms and lived experiences.

Diagnosis is important for accessing the right support, for example, financial assistant, an ECHP, and support from charitable organisations. A person living with FASD may also be entitled to PIP or other disability benefits.

There has been a shift away from using language such as ‘Fetal Alcohol Syndrome’ and towards the term of ‘Fetal Alcohol Spectrum Disorder’ to reflect that there is a range of symptoms for people living with this condition and it affects everyone differently. Further, since a baby undergoes such a large development period in utero, there is often no way of truly calculating the impacts of alcohol on the baby until something has gone wrong and / or they undergo psychological testing.

If you’re concerned about FASD please contact the National FASD Helpline on 0208 458 5951.

Thank you to Cassie Jackson for helping us to understand FASD in more detail. Cassie is a Highly Specialist Clinical Psychologist who is founder and director of The Centre for FASD, a multi-professional service, providing full FASD assessment, diagnosis, and post diagnostic support for children and their families.

The contents of this article are for the purposes of general awareness only. They do not purport to constitute legal or professional advice. The law may have changed since this article was published. Readers should not act on the basis of the information included and should take appropriate professional advice upon their own particular circumstances.